A mama on a mission to live, love & be well with fibromyalgia

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Following the onset in week 22 or so, my low back and hip pain became worse. Sleeping was difficult, I had to start the night with a hot water bottle and as the night progressed it got harder to ignore. By 5am I wriggled around trying to get comfortable more than I slept. The morning was spent trying to mobilize and push through. My midday liedown became challenging for relaxing enough through the pain to rest and as the afternoon and evening wore on the pain became worse.

I tried third trimester yoga videos on YouTube (this one’s a goodie), used my heatpack religiously, took Panadol and Panadiene as sparingly as possible and attempted to pace appropriately. It felt like the business end of pregnancy came far too early!

I tried to really focus on eating nourishing food such as Bircher muesli, soups and salads. I also took a pregnancy multivitamin and probiotics to support my body.

The fatigue was reasonable (but difficult) given the battle that sleep had become. My body was heavily exhausted but I woke every one or two hours, sometimes more. Getting up was hard, but two year olds wake when they wake and you can’t ignore those loud “mama, mama” calls!

My tiny passenger seemed to make use of his growing space, simultaneously kicking and punching high and low. He always let me know he was there, growing nicely, getting ready to come.

The short Gestational diabetes test was not as awful with better planning this time. I ate a proper breakfast and took reading materials. Though the sugary drink made me feel dehydrated all afternoon!

Unfortunately the results were not good, so I had to do the glucose tolerance test…I had to fast for 10 hours and go to the lab at 8am (with no breakfast or coffee!), have a blood test, drink the same sugar drink, sit for two hours and have another blood test. I was quite unwell with it and so had to lie on the bed in fetal position to stop from vomiting, but I made it! I was pretty wiped afterwards and so hard a very quiet afternoon.

I was super pleased to find the results were “perfectly normal”!

At 28 weeks I crossed into the third trimester. With midday naps, pacing, good food, good supplements and regular physio I felt like I was coping quite well despite the battle that the nights brought (including dead arms every hour). The low back and hips were not so bad when I didn’t overdo it, the upper back was not so forgiving and I did get some regular spasming which wasn’t fun. Lying down with the heatpack, taking Panadiene and meditation helped.

By week 29 I was focused on organising the last of baby’s things so that I could rest more later, reading up on labour and enjoying my last weeks with Nu as an only child. This child brings me such joy and I really revel in the fact that he’s super rough and tumble but always has a kiss and a cuddle for his mama.

I thought I would share this journey, as I did with the first, to provide a sense of what it’s like for a mama with Fibromyalgia to do pregnancy. Find weeks 4-6, 7-10, 11-14, 15-17, 18-20,21-24 here and look out for the rest soon!

MSM (methylsulfonylmethane) is an organic sulfur-containing compound that is meant to help with pain in the tendons, ligaments and muscles.

Dr Axe outlines six benefits of taking MSM, including joint pain, digestive problems and muscle pain and spasms (a biggie for me): “Research suggests that MSM can act like a natural analgesic, helping prevent and treat muscle aches and pains, throbbing and swelling while improving range of motion and mobility.”

The article goes on to state that, “MSM also restores the flexibility and permeability of cell walls within muscles, which means nutrients can pass through the tissues more easily, facilitating repair work faster and removing lactic acid, which causes that “burning feeling” following exercise.” This is great for people with Fibromyalgia, who often feel greater post-exercise pain – I often get severe pain in my lower body for up to three days post exercise, if I have overdone it.

“Digestion is the biggest energy requirement of the body (Approximately 70-80% of your energy is spent on digestion each day). MSM increases the absorption of nutrients so that the energy expenditure on digestion is vastly reduced.” Which is good news for a person like me who doesn’t tend to take the nutrients from food efficiently, using iron as an example, despite a healthy level of iron rich foods I cannot keep my iron levels up without regular injections. Also, any efficiency in energy is a bonus for people with limited energy levels.

MSM and Me

I began taking MSM in July as this was when I began to suspect the pain in my neck was actually Myofacial Pain Syndrome – painful, severe trigger points that recur no matter the treatment. Trigger points are usually considered separate to Fibromyalgia but there are some doctors who believe them to be part of it (like Dr Liptan).

After a Google search for potential side effects, potential benefits and checking any interactions with my current medicines (amitriptyline and low dose naltrexone) – I decided to try it.

It took about six weeks to build up in my system. At this point I noticed a slight reduction in pain, perhaps one pain point on average in my neck, which is actually a big deal for me. This helped reduce the number of severe headaches and I didn’t have any other pain relief for several weeks.

I began with tablets, they were big! I had to take one tablet three times a day, and it was difficult swallowing them. So when I finished the bottle, I ordered a powdered version. During the wait the symptoms returned. It took another few weeks to feel the benefit of the powder. It is much less of a burden to take the powder, half a teaspoon dissolved in a cup of water (which I skull) is really easy for me.

A minor medical event, separate to the Fibromyalgia occurred in August which set me back. But I am going to keep the low dose naltrexone and MSM going for the year’s experiment and I have just added moringa powder (which I will report on later) – moringa is a good source of protein and amino acids, as well as iron and magnesium which is said to work well with the MSM.

By week 21 my burgeoning bump had taken over! Forgetting my new size, I brushed against things and banged it a few times before learning (that can hurt!). At week 22, I wondered how I could possibly grow for 16-18 more weeks.

I started to think more about the birth. After a 20 hour posterior (baby facing the wrong way causing severe back pain) labour with Nu, I was really keen for a nicer birth story. The news that second labours tend to be shorter and that those who have had posterior labour previously don’t realise they’re in labour until fully established gave me some confidence! I was planning all I could to save my energy and to avoid the stress of the first few days that we had with Nu. The first was that my husband doesn’t leave me, if he had to go, I had to go too! The second was that I know the signs of back labour and if it occured again, I would ask for intervention sooner.

A steady low back ache developed again at week 21, disturbing sleep and making the day more painful. A heatpack, pelvic tilts and child’s pose were somewhat helpful.

The only thing that really helped was reducing my activity level, aiming for 8000 steps or less. I could manage this for most of the week, but on weekends it was more difficult. There’s always too much to do on a weekend and it’s always been difficult to keep up with my husband. Another hard lesson in pacing.

We named our wee boy and the sweetest sound is Nu saying his name and talking to baby through the bump.

At week 23 I felt like there was a lot going on physically. I was put on antibiotics for bacterial vaginosis. My low back and neck were troublesome, to say the least. And I began getting Braxton Hicks contractions. It was time to admit that I was quite pregnant! The countdown may have begun for the end.

I thought I would share this journey, as I did with the first, to provide a sense of what it’s like for a mama with Fibromyalgia to do pregnancy. Find weeks 4-6,7-10, 11-14, 15-17 & 18-20 here and look out for the rest soon!

The time to give up sleeping on my back came too soon! The night became a rather long struggle of tossing from side to side and waking up to dead arms. My back, shoulders, neck and glutes all yelled at me all night, no matter how I arranged the pillows. Even my meditation/daily rest became difficult due to positioning.

It didn’t help that Nu began really testing the boundaries and took extra energy to manage. Though, he was still very excited about baby, from 18 weeks he talked often about the next scan when he would see the baby dance.

At week 19 Nu got a really bad cold and was clingy and not sleeping well, which was really difficult. My pain issues from sleeping on my side and Nu waking me in the night and very early several times, made coping very hard.

Not having to sit at my computer for several hours four days a week really helped my neck and back. The work I did do seemed to flare it up a bit faster due to the lack of sleep.

It wasn’t all bad news, due to baby being tucked in the back it took a while for movements to become more frequent and obvious (which is the best part of pregnancy, until they wedge a foot in your ribs) but when they came it was reassuring.

One thing my second pregnancy taught me, is that the times my body craves coffee are actually the times I need rest. Having a two year old means I can’t always indulge in a full lie down meditation, however I can sit with my heat pack for a time. It makes such a difference. I can go from miserably exhausted, barely keeping my eyes open, to relatively normal after 30-45 minutes of good meditation.

Plus a 10 minute lie down can make a difference – relax (I use a variety of pillows); Close your eyes and count (in 10, out 10, in 9, out 9 etc) until zero; slowly imagine each body part relaxing (right hand thumb, first finger, second finger etc); lie for as long as you can gently breathing.

I saw an obstetrician at week 19 to confirm that my midwife could keep managing my pregnancy with me. When discussing pain relief she said she’d need to refer me back to the pain clinic, when I expressed my feelings of disappointment with the most recent doctor I saw there, she said that I may get a different doctor. *Sigh* She also said that Fibromyalgia doesn’t affect pregnancy, or vice versa. This stunned me. Pregnancy reduces sleep and places stress on the immune system and body, and Fibromyalgia is worsened through reduced sleep and stress on the immune system and body. The entire body is connected. You can’t have something happen in one area (eg. The uterus) and not affect other areas (eg. The back, neck, shoulders, hips, glutes, sleep system and immune system). So I felt like it was just me and my research in a 20 week endurance event. But I was used to that!

We made sure that my husband and Nu could attend the 20 week anatomy scan – again the baby was very busy so it took some time to capture all the pictures. We waited with baited breath to be told it was a healthy baby boy! Nu took a few hours to warm to the idea that it was a boy. I talked myself into it over the next day. Husband was happy.

I thought I would share this journey, as I did with the first, to provide a sense of what it’s like for a mama with Fibromyalgia to do pregnancy. Find weeks 4-6, 7-10, 11-14 and 15-17 here and look out for the rest soon!

Half, or sanding, sun salutations – sun salutations are my base routine when I’m doing a 10-30 minute yoga routine and this is a great half version for times when you can’t get through the whole thing.

Unfortunately side sleeping had become a necessity (thanks back) and my neck was not very happy with me. Despite multiple pillow changes, tossing and turning all night and medicine at bedtime, I was waking with a rather stiff and sore neck.

The first moderate neck headache occurred late in week 14 and was managed with repeated heat pack, Panadol soluble and a relatively quiet day (I had a two-year-old boy, quiet was not a word to be applied to our days!).

The physiotherapist, who does neck traction and places acupuncture needles in tight neck and upper back muscles, really helped me. Unfortunately this is not covered at all and private fees are not cheap, so I had to survive on one visit per fortnight. I highly recommend trying this for Fibromyalgia or pregnancy (just ensure they are trained in treating pregnant women as there are points to avoid and there is a slight risk, but they have to disclose this before they treat you).

I had some spotting as we headed into week 15 which gave me a little fright. It’s quite normal in the second and third trimester and is generally alright if it’s light, brown and not accompanied by pain. It would have been so great if I could feel baby move so I could double check!

Nu remained excited about baby, and often told me that he saw the baby on the TV and it was dancing (baby was busy in the scan and it took a while to get the measurements) – confirming it is a direct relation to Nu! He liked to say hi to baby -pat, kiss and do the sign of the cross (a Catholic blessing).

Somehow, while still in bed and having only been awake for a few minutes, I managed to pull a muscle in my neck while stretching out he stiffness from sleeping on my side. OUCH! I was in such agony. On the first morning I couldn’t move without severe spasms radiating down to the shoulder. Luckily, injuries heal, and by day three I could move a little better and had less pain. It took a week to get full movement back and I was rather nervous of moving from side to side in bed after that!

Despite the neck issues, I fully enjoyed the benefits of the second trimester. I relished food and our walks, I enjoyed all my projects and I managed to make a small dent in the tick list of items baby needs. I am determined to organise baby’s room and belongings before the third trimester hits so that I can focus on resting, exercising and generally trying to be well.

I was heartened to find a few blog posts by other expecting fibro/CFS mamas (or mamas when they were expecting) that showed the 20-25 week area to be relatively cope-able too.

The absence of stress and too many work hours really helped me to cope physically. Although the burden on my husband was not light. I was hoping that by not getting so run down in pregnancy and having my husband home for six weeks after, that I’d be able to pick up some work at early as five months after baby.

I’m a little disappointed, it feels like one step forward and two steps back.

I had been feeling quite well the day before, home with the children with relatively low pain and fatigue levels. I had had a busy morning ferrying the children around and then getting the baby to sleep.

All of a sudden my fatigue levels spiked, I was unable to stay up and all I could do was lie on my side in bed and breathe and try not to vomit. I was too tired to listen to my meditation (too tired to listen!) After 45 minutes my head was clear enough to get up and take a bath and smear lavender oil on my feet. When the baby woke I was only well enough to lie in the floor while he played.

When this happens, not only am I feeling the symptoms, but I’m feeling the grief and the guilt. I think ahead to all the things I need to do but now worry I can’t do. I think of the burden on my husband trying to earn all the money and help so much with the kids and the house. I think why it is not fair. I have been doing All The Things, everything I can think of to be well. So just feel like this is a slap in the face and a reminder that no matter what I do I still have Fibromyalgia.

I’m taking the Low Dose Naltrexone, going to bed as soon as I can, sleeping as well as I can, pacing as best as I can, taking MSM, doing gentle yoga and stretches, trying to get to the physio (no easy feat to sync her schedule with my childcare opportunities). I’m relentlessly optimistic about my wellness. And here I sit.

I know I’m lucky that my weary legs can carry me up and down the stairs to my baby’s room. That I have a car to get around (because I’d never get anywhere by public transport with two children). That my husband looks after us. I have done so well and experience so much joy as a result of the hard work I’ve put in. But sometimes it’s just a rough day with Fibromyalgia.

After more than a decade fighting Fibromyalgia, I couldn’t imagine that the last two years could bring as much learning as it has.

I have stepped up the fight. I am trying Low-Dose Naltrexone and an MSM supplement at the moment. I am using yoga as therapy (targeted poses to keep my body moving). I am devouring research and books and articles about fighting the symptoms and the illness.

A large school of thought in the cause of Fibromyalgia, is that it is caused by underlying issues that need to be resolved. For example thyroid issues, Candida, viral infections, allergies etc.

Lesson one: Don’t be surprised, or discouraged if one avenue of potential healing doesn’t produce results.

Many Fibromyalgia bloggers/writers/doctors blame Candida overload for Fibromyalgia problems. They recommend cutting dairy and sugar and gluten and taking varying supplements. There are entire articles devoted to clearing Candida. Well, I have zero Candida in my system at the moment and my neck has been worse and the fatigue has been higher.

I also have “optimal” results in the usual blood tests (thyroid, iron, antibodies etc). All worth checking and noting that “normal” does not always mean “optimal”.

I don’t give up, I store this in my “don’t worry about it” column and move on.

Lesson two: Fibromyalgia is a massive undertaking of trial and error, which feeds into lesson three: you have to do the work yourself.

I have had precisely one doctor who is willing to listen to me, work with me and trial things with me in the 15 plus years I’ve been dealing with chronic pain. That Dr still doesn’t have a lot of avenues to offer me, but he is willing to let me trial things I research.

I turned up with research papers prepared to be persuasive about a trial of Low -Dose Naltrexone, he agreed immediately.

I have tried a multitude of things to fight Fibromyalgia. Physical therapies like osteopathy, chiropractic, massage and physiotherapy (neck traction and acupuncture needles in trigger points help me). Supplements like MSM, magnesium, multivitamins, iron, olive leaf extract, probiotics and a truckload more I can’t remember! (A helpful note here, using powders dissolved in water seems to absorb better than tablets for me).

Yoga, walking, stretching and swimming are helpful exercises that I enjoy. I have to modify for my neck and knees though. There’s also a clearly defined line that I must keep to, 25 mins of walking is enough, less causes pain in the lower body and more causes pain also!

Avoiding allergenic foods specific to me (bananas and dairy are occasional foods, corn and wheat are once per day foods according to my test). This was the one good thing that came out of hundreds of dollars spent on a naturopath. I trialed gluten-free eating a couple of years ago and found no effects while off or adding them back in. However, I do prefer non-glutenous grains like quinoa and millet as they have extra nutrients too.

There is a mind-body component. Meditation simultaneously helps me rest (I cannot nap) and teaches my central nervous system to calm down. Gratitude practice keeps me looking for the silver lining. Prayer helps sustain my hope (and hope is crucial, without that I’m done for). Colouring is calming and enjoyable. Reading is my favourite hobby and doesn’t require physical activity. You need hobbies and you have a right to enjoy these even with a limited energy envelope.

Almost every time I read a book written by a Fibromyalgia doctor, I have found that I have made my way to an approximation of their protocols myself.

This is all by time consuming, expensive, roller coaster of emotions, trial and error.

Lesson four is that you can do All The Things and still have Fibromyalgia.

Clearly I do a lot to manage my health as best as I can. I have learnt a lot and do a lot, daily. But I still struggle everyday with these symptoms. Mostly my neck and sleep. However, until a doctor helps me with my neck, my quality of life and my sleep will not improve.

I have come a long way since I was struggling through the day, so sore I wondered how my body was functioning, so exhausted I was nauseas most of the day and only managed by holding on to the glimmer of hope that getting enough work experience would mean I could earn enough per hour to reduce my work hours. But there is more to go until I am healed and I fight on.

In week 11 I went away for my sister’s graduation, that meant planes (always mess me up), long days and a different bed.

Surprisingly, my morning sickness flared up the day before 11 weeks and stayed up while I was away (I slept poorly and was quite sore). I was also hungry every two hours, I really got tired of figuring out what to eat.

My back was not a happy camper. The entire spine seemed mad at me! My neck was it’s normal, stiff and sore self and my low back was intense. I experienced a burning sensation along the lower back most of the day and night and needed to lie on a double folded winter duvet to be comfortable. My upper back went into spasm semi-regularly. My usual physiotherapist suggested I see a physio who specialised in women’s health.

Our nuchal scan (assessing the risk for some genetic diseases) was scheduled for week 13, as this week enabled my husband to make it. He got to see the baby for the first time.

I met the second of the team of two midwives who looked after me, filled in many forms and heard my precious baby’s heartbeat.

My energy levels did get a little better as week 12 progressed toward week 13, but I was still super tired and struggling with sleep. The nausea receded and the hunger became less of an issue, which was a big relief!

As my pregnancy would span winter and spring, and the baby would arrive in summer, I had quite a few seasons to address for my maternity wardrobe. I purchased three maternity/nursing bras, two pairs of maternity jeans, two tops with long sleeves and a coat. I intended to buy a few nursing tops in summer.

It had gotten more exciting and more calm once we made it to the second trimester.

I wrote these posts during my pregnancy so that I could share what it was like to do pregnancy with Fibromyalgia, you might also like these:

Week seven was when things started to turn around a little. I had been rather sick in week six and had managed to claw my way back by eating every two or three hours, going to bed early and limiting activity.

I had lost 1.5kg in the previous week, so actually spent weeks 6-7 lighter than I had managed in years.

My favourite foods, which I devoured unreservedly, were olives, hashbrowns, eggs, salmon and cheese. I still found comfort in marmite toast and wheatbix. I also found that I didn’t get hungry, so much as starving all of a sudden!

Nu, Coop and I managed to return to semi-regular 20 minute walks which took a bit of my limited energy levels, but really helped my body. I also utilised my Pilates resistance band and did some gentle arm and leg work, focusing on stretching. My swissball was useful for pelvic circles to keep my lower back moving.

I didn’t remember sleep being so hard last time! I struggled a lot, going to bed exhausted, but taking ages to get comfortable. And waking about 5am, in pain, only dozing from then. It takes three pillows and an extra duvet under my body to help my low back.

When I could avoid doing too much, my neck was much better. Almost less of a problem than my lower back.

At week eight baby was officially considered a fetus and was about the size of a kidney bean. I met the midwife and had a dating scan. Nu came with me and was enthralled by the little peanut. He told dada that he “saw the baba on the TV”.

At week nine I experienced an increase in fatigue, which caused a day of being bed bound and then evened out again. It seemed my body takes a day or two at each surge of hormones!

I wrote these posts during my pregnancy so that I could share what it was like to do pregnancy with Fibromyalgia, you might also like these: